My journey with SMA Type 1

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All in a day’s work

We started out the day a bit better. We were able to get a bit more sleep last night. Logan still woke up a bit more than normal but not as bad as the night before.

And, we survived our first media mishap. I suppose it was bound to happen sooner or later. Although if I had a choice I would have voted later. A call to the executive director was pointless. It only upset me more than I already was. All I wanted was the video to be corrected for the dinner and a correction run during the newscast so people knew exactly what the money was going towards. One of our fears was that people would buy tickets thinking it was all benefiting Logan then get to the dinner and feel it was a bait and switch. There were some not nice things said to me, and they refused to correct it during the newscast.

Children’s Miracle Network Hospitals has handled this issue with grace and tact. I’m sure I could have been more tactful, but live and learn I suppose. Everything has been smoothed over and corrected and that makes me extremely happy. I think the dinner will be a huge success and a huge thank you to Nicole Young. She is the chef hosting this event and it was a splendid idea! So many families are going to benefit from this, I just know it 🙂

Brett and I have been mulling over what to do about Logan’s carseat/stroller combo. Up to this point we have modified how the carseat fits in our car and we do not keep him in the stroller for long periods of time. Simply because he sits up too tall in it. Well, we started thinking yesterday if we need to get a new system before the surgery next week. After a bit in the stroller, he starts to slump. We are concerned the area will be very sore and the slight slumping will make him uncomfortable. Another thing to look at is long term. After this surgery, he will need to lay more flat when we are going out places to help him stay comfortable.

We reached out to other SMA families and received some great ideas. I think we have decided to sell our gently used system and buy a system better suited for Logan short term and semi-long term. We are moving forward with a reversible handle stroller with bassinet attachment. This will help with next week’s surgery. We were also given some resources for better equipment and plan to look into those programs more this weekend. Right now we want to be sure we have a short term plan.

Despite everything that has happened today, I feel good. Logan has been happy. All my thank you cards for the fundraisers have been printed and I just need to sign and send them out this evening(yeah…I’m old fashioned like that). And the best news of all…my favorite lactation consultants are coming to visit and bringing yummy dinner too! I am so excited to see them and I’m sure Logan will appreciate having different faces to focus on 🙂